Mitchell Syndrome patients and families hope for new treatments after raising $25,000
HOUSTON - Four families from across the country are in Houston this week, hoping to find a treatment for a rare neurological disorder called Mitchell Syndrome. Just over 20 people in the world have been diagnosed with the genetic mutation so far and most of them have been children.
After months of fundraising, the families united at Houston Methodist Hospital to present a $25,000 check to researchers, to continue researching treatments for Mitchell Syndrome.
The rare condition is named after Michele Herndon’s son, Mitchell, who was the first person to be diagnosed with this genetic mutation.
"A lot of them have walking difficulties, neuropathy, hearing loss, some issues with their eyes. Mitchell had symptoms that we couldn’t explain, starting when he was 12 years old. He was perfectly normal until then. Then, we had a 7-year journey until his diagnosis. Near the very near end of his life, we started understanding his life a little bit more, but for him, it was too late. And we don’t want it to be too late for others," Herndon said.
Herndon is a pediatric nurse in St. Louis, Mo., and the Vice President of the Mitchell and Friends Foundation. Through the non-profit organization, the Herndons have connected with families across the globe who are facing a similar battle.
What is human metapneumovirus?
Patients range in age from 16-year-old Trey Garczynski from Mississippi to 1-year-old Augustine Morar from California.
"He got sick in 2018, and only just got diagnosed last July. It’s so hard to find other people that understand what’s going on, and it’s really been a blessing," said Meredith Garczynski, Trey's mother.
"Augustine was diagnosed four months ago. He stopped eating. He was pretty unwell. He wasn’t meeting his milestones. We were told we didn’t know how long he would have when they first diagnosed him," said Kristen Morar, Augustine's mother.
While the future is uncertain, the families are hopeful that this newly funded research could help save their kids' lives.
"They did preliminary studies with riboflavin and testing with the fruit flies that have the same genetic makeup as him, and it showed to be successful. It’s the greatest feeling ever to go from zero hope to all the hope in the world. And we have all the hope for him in the world that he’s going to do well now," Morar said.
DOWNLOAD THE FOX 26 HOUSTON APP BY CLICKING HERE
To learn more about Mitchell Syndrome and the Mitchell & Friends Foundation, click here. https://www.mitchellandfriends.org/